I'm baffled - need advice please! (sorry long)

[simstash]

I'm posting this thread in the hope someone would help me with an advice or their own experience.

First of all, let me mention that my glucose has never been stabile - it has always been doing jumps and lows. I am 25. This sounds sad and it is but even though i've been living with diabetes for the past 15 years (only 15 years compared with a lot of you) i already have rhetinopathia and polyneurophatia.

Considering this fact, i was struck dumb when the neurologist at the Croatian diabetes institute told me my condition was satisfactory considering the number of years i've been a diabetic!

My other and in fact bigger gripe (and what the above stems from) is that i haven't been taken seriously by a lot of specialists i have seen in the past 2 years, about these symptoms:

-constant dizzyness
-constant feeling of 'shakiness' or trembling from the inside - i feel as if my sugar is rapidly dropping - but it isn't!
-i feel cold very often, and shivering, even at higher temperatures when i would always feel normal several years ago
-i get tired very soon and at the end of the day i'm literally shivering with fatigue
-my concentration and the ability to think quickly is considerably lower
-occasional numbness in feet, more often tingling sensation (but even that has seemed to stop in the past few months)

I have done many tests. My thyroid gland is excreting all hormones just as it should. My blood circulation, my heart condition and the level of cholesterol are all normal. My kidneys and liver work ok. But still i don't feel normal at all.

When i complained to my diabetitian about these symptoms he told me it may very well be neuropathy, that this could be the reason why i have all these sensations. I've also done some yahoo search and i thought this may be it then - neuropathy. I am sure some of it is caused by this but i had to get off work (it was a stressfull job) and i am not feeling safe walking in the street on my own much more often than not. So this state is not normal at all.

Why then has the neurologist said that he doesn't see any connection between the state i'm in and the symptoms i describe. He is said to be one of the best in the country but that doesn't make me any less concerned about my body.

Another thing is the tests that i had done were only on peripheral nerveous system (as part of the program they do in the institute) so my diabetitian advised me to go to another clinic and have tests done there. When i did the neurologist there told me that it was all in my mind! And without even considering the possibility that it might be otherwise.

I went to another diabetitian to ask for a second opinion but she told me that this didn't have anyhthing to do with my constant change in blood glucose - that is, my nerves weren't damaged by oscillations in my blood glucose.

I am completely confused. Anyone that has ever experienced this or something like this, please help with at least your story or advice. It will be greatly appreciated.

Natasha

ps. please excuse grammatical errors or phrases which are not correct, english is not my first language.

[MarkMunday]

Those side effects (if that is what they are) sound terrible. I have seen similar complaints from people who can't tolerate human insulin. I have never had that problem, so I can't comment on it. But you can get lots of information about it from this site (http://members.tripod.com/diabetics_world/).

How have your blood sugars been? What is your HBA1c and how has to been tracking over time?

Cheers,

Mark

[skilz123]

I too felt this way for a little bit, not as bad at all, but similar problems. What I believe it was, was when they switched me to try Lantus and instead of a fast acting to take Prandin at meals. Prandin is a oral med rather then insulin. At first it worked well but the main problem I saw was that the longer I was using it the higher my sugars would go up and then drop back to normal. So what would happen is my sugar would raise to like 300+ 1-2 hours after meal and by 3-4 be back to normal. This constant fluctuation made me get the shakes, light headedness, dizziness and other things. One other thing that also made me feel this way was taking an Ace Inhibitor, Altace, not to mention at one point I was on Altace and still on Prandin which made the effect twice as worse. Not sure if you are on either of these but if you are having real highs after meals often, this could definitly be why, I myself only have slight retinopathy, but no other problems. I am 25 and have had diabetes for almost 10 years with pretty decent blood sugars for the first 6-8 years. Not sure what regimin you are on but I take Lantus 2x a day 12 hours apart, Novolog before meals and eat very low carb, max 30 grams per meal and usually 15 at breakfast and lunch, unless it is an exceptional time then I may have 45, this allows me to only take 1-3 units of Novolog premeal which limits the variability greatly. Since doing this about 3 months, my sugars never really go past 160 and never below 70 with the occasional 200+ and 40- but very rare. I have never felt better since my honeymoon ended. Hope this helps and I would be more then happy to discuss this with you more via e-mail or phone if you need additional help, I know how awful I felt when I was going through this.

[am1977]

It sounds like you are not getting the answers you need from your medical team. Those symptoms must be very unpleasant for you. I haven't experienced those things, but if I had I would seek help from other doctors or health professionals. As it is, Diabetes compromises your health and is serious enough, you don't want to go on too much longer dealing with these things.

Sorry I couldn't help you more, but I hope you find out what exactly is going on and hope you feel better soon.

Take care.

[simstash]

Hi, thank you everyone who took time to reply!

Mark Munday - thanks for the link you posted, it does look interesting from a quick scan i did and i am interested in the possibility of my body rejecting insulin. My sugars over the years have been terror of terrors, really low (below 2) and really high (above 25) and not rarely both in the same day. My HbA1c that was measured in hospital 2 months ago was 8,54 - not that i couldn't have done better but it's been even higher in the past.

skilz123 - i know what you mean with fluctuating glucose levels and its affecting the body. I am trying to find out if it's really up to that that i feel like this. These symptoms have been with me for the past 2 years or so, they started occuring sometime after my switching to Humulin and Humalog (i was on Homofan and Homorap before that), but now with Lantus (today is the 3rd day i've been on it) the sugars are constantly high.
I've never been given tablets for my diabetes - does Altace belong in the same group as well as Prandin? My hypoglicaemias mostly occured during night and i think the problem was in high sugars after meal but more in the way i couldn't get used to Humulin (the long acting one). My carb intake is higher than yours - approximately 45 per meal (that was even in hospital's 1000kcal diet which is minimal i think) and i weigh 55kg which makes my current total insulin dosage just about right, so that's confusing too (and i do some exercise, as much as the dizzy feeling allows me) - i've read somewhere on this forum mention that the long acting insulin should take up to 60% of total insulin dosage so according to this Lantus will have to go up on the cost of Humalog. Either that or a split dose that you do (i was surprised when i read that many of people on here do take split doses of Lantus as it's being described as a 24-hour lasting insulin).
It is very kind of you to want to talk to me about this, i would like to exchange some experiences. I'm glad that you manage to keep such a good control of your sugars and i do hope your rhetinopathia doesn't go worse.

am1977 - thank you for your support and good wishes. As for my medical team, yes it does get frustrating when you're not heard by those who should try to help you with their knowledge.

Anyway, i'm hoping it will get beter with Lantus. Life with diabetes is a fight not to be given up on, and with a smile:)

[HeatherP]

Welcome Natasha. It sounds like you've been just about run through the wringer. We just got another member from Croatia last week, and it sounds like your country isn't completely up to speed when it comes to Diabetes. Or at least, some areas/doctors. Once your sugars even out (hopefully they will and soon!) pay close attention to see if any of your symptoms go away. If they don't, then you need to perservere until you find a doc that will work with you to find the cause.

It may take you quite a while to get the exact right dose of Lantus figured out and working for you. I think it took me several months. When starting on/making changes w/ Lantus, you have to wait 3-4 days to see a correct result, so give it some time.

I'm one of those lucky folks who got stuck w/ 2 injections of Lantus a day. Try it with the one dose, and see what happens for now. It's probably going to take your body a while to adjust. I would almost suggest going back on your old insulin, but it doesn't sound like it was doing you much good.

How often do you test? With which meter? and how have your A1c's been? (assuming they do them over there) Everybody here is happy to help, so dive in with your questions and you'll get TONS of feedback.

Nice to meet you,
HeatherP

[simstash]

Thanks Heather,

Yes i do sound like a mess the funny thing is i don't even look it. That's what they mean when they say diabetes is a creepy illness. I'll look for this Croatian member on here, there's even a chance we take same kind of insulin. Yes our doctors do like to tell they're up to date with everything but there was only one our doctor present at a recent multinational congress about Lantus in Europe and i was only told about Lantus earlier this year when it turned out they had Lantus for 2 years at least and apparently it's been present in the states for much longer than that. Unfortunately although i've been a patient with the Croatian diabetes institute for several years i haven't seen much willing cooperation between medical teams and patients. I don't see how this can be when close cooperation is what is essential in this.

Anyway to get off this rant, my HbA1c was measured to be 8,54 2 months ago. I test approximately 6 times a day since i've been on Lantus, and i've tested at least 4 times a day before that, even though i must admit there was a looooong period years back when i wouldn't test at all, only use urine strips. Which is appaling to me looking back. I guess hindsight is a great teacher in life.
I just got Ascensia Contour a month ago, had Esprit before that.

I am going to persevere with Lantus, i'm aware that it is going to take a lot of patience to get through it now.
Thanks for the support and willingness to help! :)

[Belinda]

Welcome to our forum....it is a great "family" of support and knowledge. I am sorry you are having so much problems. Hopefully you will find the right meds and doctors to help you get everything under control.

[HeatherP]

Natasha,

I'm sorry, the new member I was thinking of is actually from Romania. I realize it's not the same, but you're kind of in the same neighborhood aren't you? (my high school geography teacher is rolling in his grave right now)

Any way, the name is Portok.

:D
HeatherP

[Shalyndria]

Posted by portok on 11-23-2004 07:13 AM:

Hy simstash and welcome. I`m sorry to hear that you have some problems and i hope that you will find the power and the advises to get over this period. Unfortunately i had diabetes only for 1 year and i really don`t know what to advise you.
I`m from romania as Heather said but i really think that your country is more developed then mine. But i sure understand the way your doctors react at your problems or better said don`t react at your problems because the same thing happen to me.


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Posted by gettingby on 11-23-2004 10:42 PM:

It's really sad when the health care professionals who are supposed to be helping us actually don't listen to what we say. No body knows how you feel but yourself and you deserve to be listened to. Just keep doing internet searches and asking questions. We will all help where we can.
Cin
PS HANG IN THERE !!!!!!!!!!! IT WILL GET BETTER.

__________________
"We will be known forever by the tracks we leave". What kind of tracks are you leaving?
Type 1, MDI. Levoxyl, and now an iron supplement(hope it works).



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Posted by simstash on 11-25-2004 10:42 AM:

Belinda - thanks, i'm hoping for that too. I probably won't be able to come here every day but whenever i do i'll be scraping the knowledge all you guys leave on here some tips that i've read have really been helpful. I remember visiting another onlline diabetes forum but there was alot of bickering going around and people posting provoking stuff. I haven't been there since but it is is so much different here.

HeatherP - that's ok, i must confess i don't know the exact geographical layout of the United States either (looking at Bay Area in your sig i can't even tell if it is in the states). But yes we are almost neighbours with Romania.

Portok - thank you for the welcome. Don't say unfortunately though, the shorter your diabetes history the better! I think one of the reasons they are so lame and slow to help us might be that they're state employed as opposed to being in their own business. I might be wrong though. As long as we're backed up with other sources of help we should be fine, as Gettingby says. Living with diabetes we're forced to be our own doctors.

Gettingby: thanks for the support. Don't you find it absurd that although a lot of diabetitians are diabetics as well, it doesn't actually make much difference?

Anyway, only the most positive of thoughts keep you going.